Palliative care for disabled children and young people embraces holistic, high quality, evidence-based care, recognition and timely management of symptoms, recognition and discussion with the multidisciplinary team and with families about the possibility of dying and care and support through life, death and bereavement. Systems are being piloted across the UK to collect data about who and where children and young people with palliative care needs are and to ensure robust funding mechanisms are established for provision of care in an equitable way.
Decision-making within a legal and ethical framework is paramount in this area of clinical practice, along with clinical networking within care pathways to ensure care delivered is of the highest standard.
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